Did you know in this country there are more then 800,000 people with Cerebral palsy? But yet we get little to no funding or awareness.  The only way we are going to make any progress is to band together and demand more from our congress, and the CDC.  Please write a letter, make a phone call to your local senators, and get the word out that we as parents are fed up with getting the brush off.  There is currently a group you can find them at Reachingforthestars.org, and there are a ton of facts and all the latest on research and our fight to gain funding.  Did you know that CP is the number one developmental delay affecting our children?

8,000 babies are born each year with CP, and another 1,200-1,500 preschoolers are discovered to have it every year? That is a ratio of 3:1,000 live births,  that is pretty high. It is on par with the autism rate.  And Autism has gotten a lot of recent awareness, and have made great strides in funding.  And it all started with the parents, standing up to say enough is enough. 

The incedence of CP in children is higher then childhood cancer, hearing and vision loss, spina bifida, and Cystic Fibrosis, and on par with autism.    

About 75% of people with CP also have other developmental disabilites such as seizures, failure to thrive, mental retardation, autism, and visual impairments or blindness.

They are at risk for muscle atrophy, contractures, and scoliosis.

About 80% of the cases out there have no explinations. 

The rate of CP in this country is rising, and it is my personal belief that as long as preemies are being saved at a younger gestational age, that the rate will continue to get higher, unless we can figure out why brain bleeds happen, why one preemie gets it while another doesn't. why one twin will have it while another doesn't.  If we could answer those questions then we would be a lot closer to the truth about this horrible thing.

Did you know that the research that we rely on to help our children, was done in the 1980's with poor funding, and poor documentation?  Do we REALLY know if Baclofen really helps, what are the long term effects?  We don't know because there are not current studies being done to find out.  

RFTS has been to capitol hill tring to get them to allot some money in the budget to start a national survellance of CP and research. Right now the CDC gives $0 to CP for a survellance of this disorder, but fetal alchol sydrome which has a ratio of .8:1,000 gets an estimated $12,000,000. There is something wrong with that picture.

Still not convinced how about the fact that a person born in 2000 with CP will have a life time cost of living in the billions. think about how much the government agencies pick up those tabs through medicaid, SSI.  

Please check out www.reachingforthestars.org and check out the fact sheet and the testimony given at Capitol Hill. 

that is my little girl Haley she has cerebral palsy she will soon be one years old on 6/10 and my question is      why is it that kids who cant sit ,stand, walk ,talk ,eat, and may never do any of these things ever on there own be pushed to the side and get no funding for research ?    

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Comments:

krist...
Jun. 2, 2008 at 1:45 AM Great Post, Thank You.  Popular!

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MOMMY...
Jun. 2, 2008 at 2:12 AM Great post !!!

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Jilly...
Jun. 2, 2008 at 2:23 AM Wonderful post. Hope is gets moved up.

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Hayde...
Jun. 2, 2008 at 2:43 AM Voted popular! Great post

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Ginny19
Jun. 2, 2008 at 3:06 AM voted popular, too

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tatar
Jun. 2, 2008 at 6:20 AM call Oprah's Show. I watched one of their episodes years ago re: cerebral pasly. two kids whose bodie slowly deteriorated. They used to be active then became in vegetative state. The parents however found a doctor that was able to cure them. They were cured fast and the two kids we're shown  after the treatment, riding horses and jumping trampolines. It was amazing. Goodluck.

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Dnjbowen
Jun. 2, 2008 at 7:44 AM

Great Post... Thank you so much for sharing...  Happy Early B-day Haley.......

(Hugs)

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Zippie
Jun. 2, 2008 at 8:54 AM

Keep up the good work. I know it's hard, my brother has 3 with cp.  keep working with her muscles everyday and never turn away family help even if it's only for a few hours, once in a while.

I love your video

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4mysu...
Jun. 2, 2008 at 9:05 AM

Good post.  I have a son with severe autism and I think I know what you mean.  Until recent times when autism became so prevalent that it began to effect the media and Hollywood, we were ignored too. 

Good job raising awareness and what a beautiful daughter you have :)

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rainalea
Jun. 2, 2008 at 9:22 AM My best friend is 29 and has cerebral palsey. They (doctors) said she would never walk talk, live a normal life or have kids. She has overcome all of these obsticals! Keep pushing for more awareness!

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